When you’re a Spoonie ( person with a chronic life limiting illness but see the link for more details) people tend to assume that your problems all come directly from your illness without ever seeing how the secondary problems proliferate.
You’re in pain and the pain means you can’t sleep and the lack of sleep causes its own problems. The constant mental work of managing your very limited mental resources end up costing more of those resources. Your coping mechanisms have coping mechanisms.
At least once a year I burn or scald myself because my brain is on automatic pilot and I’m trying to do something that’s necessary for me to function.This time I stuck my whole right hand into my coffee filter cup while it was full of near boiling water. Then tipped the whole thing, grounds and all, all over the kitchen. Then I forgot I was wearing rings and had to strip them off after my fingers had started swelling.
I got lucky. Most of the swelling went down with a combination of cold running water as long as I could stand it and then sitting with an ice pack on the remaining swelling. But it’s annoying. And I never got my coffee. And I have a enough swelling on my right ring finger that it’s put a serious dent in my typing speed.
Now there’s no obvious line between Fibromyalgia and a burn. But I’m pretty sure that this burn happened because one of the consequences of Fibromyalgia is having to go about my day with a considerable portion of my brain either distracted by pain or working to manage my symptoms or my spoons.
Most of the Spoonies I know pick up multiple injuries a year as a result of their primary condition. Falls because their balance is wrecked, scrapes because they’re not fully aware of their surroundings, self inflicted cuts caused by trying to prep food while half asleep. And the worse bit usually isn’t the physical injury. It’s feeling like an idiot. Here I am, a full grown adult, and I stuck my hand in scalding hot water out of my own incompetance.
This week I put on a kilogram. I stuck to the diet all week long. I was well under my limit most days. I still gained a kilo. FUCK MY LIFE.
I suspect that it might be down to fluid. My right leg is really swollen at the moment. Like having difficulty getting into leggings that fit just fine 10kg ago swollen. It feels like a fucking balloon and my right knee is being a whiny bitch about it. I’m used to it complaining when I stand or sit but now it’s complaining while I’m in bed. Bitch, I am literally horizontal what more do you want?
It’s so frustrating to spend so much time and effort on this damn diet and get so little back. I don’t know what to do. I don’t have a plan except to keep going. The only other thing I could do would be to cut back on the carbohydrates even more but I really don’t want to do that because it’s just so miserable.
Hopefully it won’t be too long before I get referred to someone who can do something about the fluid.
After a very active weekend during which I had a couple of days where I ate less than half my allotted calories I have lost a whole 400g (just under a pound). And I’m in agony. And feeling like shit.
But at least I survived a 3 days of my Mum insisting that I should have a biscuit because they’re only small. She did make sure to tell me that she’s super proud of me for losing weight. It’s nice of her to say so but it doesn’t change the fact that the weight loss is meaningless.
Tomorrow (as I write this it’ll be yesterday by the time it posts) I have an appointment at the leg ulcer clinic. I don’t have a leg ulcer. I assume this is my Doctor trying to get me compression wraps. I predict that I will yet again be sent home with nothing but we shall see.
[Edit: I was not sent away with nothing. I got an actually useful referral. Yay!]
Last update. Diet Page
So the CBD oil that I’ve been talking about in previous posts here and here is definitely working.
My background levels of pain have greatly reduced and it’s now easier to deal with breakthrough pain. However my right knee has clearly decided to be a horrible bitch about things. It’s swollen and it’s grinding and it won’t reliably bend and it hurts whenever I do foolish things like stand up or sit down or roll over in bed.
And something else has decided to flare up. Something really painful. Something that I really need to see a doctor about but I was too late this morning to get an appointment and I have stuff to do tomorrow that can’t be moved and if I leave it till Friday to see the doctor then I will have reached my own personal defcon 10 of pain.
That’s not 10 out of 10 on the pain scale. That level of pain is just screaming until it stops. Defcon 10 is out of my mind with pain, distraction and frustration. It’s a result of having to just put up with a level and type and location of pain that no-one should have to put up with. Defcon 10 is dangerous because it makes me want to knife 40 people at random. Hopefully the CBD oil will help with this kind of pain.
If anyone is interested I will post links to the kind of vape pen, cartridges and oil I’m using.
One of the problems with chronic pain is that it’s a lot harder to treat than acute pain. With acute pain you can just knock it back with strong painkillers and then wean yourself off the painkillers. Acute pain also has a limited duration so there’s the option of putting up with it till it goes away.
Chronic pain isn’t going anywhere and over time the painkillers tend to become less effective. My pain is variable so I deal with it by only medicating it when it gets particularly bad and ignoring it the rest of the time. This is not ideal.
For the last week I’ve been experimenting with CBD. That’s cannabidiol which is a non-psychoactive component of marijuana. That means it doesn’t make you high. There’s some evidence that it can be used to treat anxiety, inflammation and pain. Sadly it’s the THC in cannabis that works really well against pain but that’s the stuff that makes you high and you can’t buy that legally in the UK.
I’ve been vaping CBD oil as it’s the fastest way to get it into the system. I’ve been using it to deal with those times when the pain suddenly gets bad. Oral painkillers can take up to 40 minutes to take effect so something quicker would be handy. I’ve also been using it when I’m feeling anxious as anxiety can make Fibromyalgia worse.
It seems to be working. It’s been helpful when joint pain hits while I’m out and about. It’s too early to be sure but I’ll keep you updated.
For now I’m using a disposable vape pen in blackcurrant menthol flavour. I was dubious about that as a flavour combination but it’s surprisingly nice. I will probably move to a refillable one now that I think it’s worth the money. If anyone else wants to try the same supplier I’m using I have a referral link. If you use it and you buy stuff I get a discount. Here’s the link – https://cbdlifeuk.com/?raf=ref1943134.
There have been some proper trials done on CBD that showed a positive effect. However only a couple have been large scale double blind trials. Most of the studies have been of quite poor quality. So I would suggest that if you are going to try it you take it slow, don’t spend loads of money on something that might not work for you.
A few days ago I wrote about my feelings of guilt at not working hard enough towards my writing goals. I wrote about how I’d been playing a lot of World of Tanks rather than writing. I said it was fun but it wasn’t taking me anywhere. Turns out I was wrong. It was taking me in the direction of pain.
One of the problems caused by Fibromyalgia is muscle spasms. Sometimes they come on without an obvious cause but they can be triggered by any repetitive activity or maintaining a the same position too long. Apparently when I play World of Tanks I grip the controller too tightly with my right hand (I use the right stick to aim and the right trigger to fire).
As a result my right arm is now, to use a highly technical medical term, fucked. I can’t feel my fingers, my hand is tingling, my forearm feels like it’s on fire and my bicep feels like I’ve been arm wrestling Thor. My typing speed is a quarter what it usually is and I need help to brush my hair and put a bra on.
It’s so bad I’ve had to break out the painkillers. Let me put that statement into perspective. I have a chronic pain condition. That means I’m always in pain. There’s no point medicating the pain all the time because I have to rely on synthetic opioid painkillers and the more you use them the less effective they are. My aim in using them isn’t to kill the pain but to reduce it to a level that isn’t a constant distraction. Thus I don’t bother with pain medication at all unless the pain is consistently worse than standing on a Lego brick.
To summarize: I’m too sore to write, too high to do chores and I can’t distract myself with video games because that would only make the problem worse. I would really like it if my life could stop sucking for a bit.
One of the most frustrating things about my combination of mental and physical disorders is that sometimes my brain just can’t. I know I’m not thinking clearly and I hate it. I don’t know exactly what causes it. I don’t know how to avoid it. I don’t know how to make it better when it happens.
It’s like someone packed my brain in cotton wool or bubble wrap. Some people with Fibromyalgia call it fibro fog but to me it feels denser than fog. I also don’t like assuming that it’s caused by the Fibromyalgia. I suspect that it’s more likely to be caused by depression or anxiety or information overload from pain or perhaps some horrible combination. Of course it could just be Executive Function Disorder in disguise.
I have a bad case of it at the moment. It’s affecting everything but it gets worse whenever I think about querying. I know that there are steps that people do. I assume that step one involves working out which agents to query but I can’t remember how I did that before and I can’t work out how to do it now. The more I try to drag my mind back to that task the harder it becomes to get it to do anything at all.
I’m hungry as I write this and soon it will be a meal time but I have no idea what to do about it. There’s a meeting that I should be going to tonight but there’s no chance of me going anywhere. There are definitely chores that need doing but I can’t remember what they are or how to do them.
I’m not entirely convinced that this post makes sense. I’m going to schedule this several days into the future in the hope that before it goes out I’ll be together enough to edit it. Of course I could forget all about it. So if you’re reading this and it’s full of typos and homophones and sentence fragments then I’m probably still too foggy to have checked it over.
I’ve discovered a cool new diet specially for those of us suffering from chronic pain disorders. It’s the “I hurt too much to get food” diet. I’m going to lose so much weight.
All the food is in the kitchen. I am currently not in the kitchen. I’ve already taken the maximum dose of painkillers and the pain is still bad enough to make me feel nauseous. Hobbling through there so I can stand for a while on a leg that thinks it’s got an axe sticking out of it so I can prepare food that my stomach thinks I can’t keep down doesn’t feel like it’s worth the effort.
There’s probably a creative solution to this but the problem with taking the maximum dose of painkillers is that now I’m too full of synthetic opioids to think clearly. Also my face is numb but my fucking knee still hurts. How is that fair?
Bloody knee. I’ve had enough of its bullshit. I didn’t fight off two eating disorders just to fall back into one of them because my knee is a drama queen.
I’ve written before about having chronic pain. Today I want to talk about the uncertainty of chronic pain because that’s the bit that you don’t usually hear about.
Everybody knows that chronic pain sucks. Even if you’ve never experienced it you know that pain is bad and that having it around all the time must be really bad. But a phrase like “chronic pain” also sort of suggests that the pain is not only constantly present but of constant intensity and location and, sadly, that is not how things are. At least not for me.
I’m now 3 days into a major pain flair up in my left leg. It might be the Fibromyalgia or it might be Osteoarthritis. I’ve got no way of knowing and it’s not like there’s a treatment for either of them. But there is a difference. If it’s Fibromyalgia then the pain will probably reduce or move at some point. If it’s Osteoarthritis then it’s not going anywhere. Ever.
If it’s Osteoarthritis then it’s just the new reality of my life. That would really suck because this is bad. This is extreme pain even by my standards and I have a list of the things I’ve been through that hurt worse than childbirth. This one has the potential to confine me to the house. This is me too sore to load the dishwasher or stand at the cooker even long enough to make an omelette. About the only thing going for it is that it’s not going to stop me from writing.
But maybe it’s not Osteoarthritis? Maybe it’s just the Fibromyalgia? Maybe I’ll wake up tomorrow, or the next day, or the day after that and it will have faded or shifted and I’ll be able to do my chores again. That’s the uncertainty. I never know until I move which parts of me are going to hurt. When they start hurting I don’t know how long they’re going to hurt for. When they’re working fine I don’t know how long that’s going to be for either.
I’m also dealing with a deep sense of betrayal. Because it’s usually the other leg that pulls this shit. Dammit, Leftie, I thought I could trust you. I thought I could rely on you.
There are days, sometimes there are weeks and months, when I’m trapped by the law of diminishing returns. The conditions of my life mean that sometimes every step forward, every movement, every attempt to do anything takes a ridiculous amount of effort for very little reward.
I’m trying to stick to a diet that means that I have to cook things. But when cooking a thing hurts as much as giving birth did, and the thing you cook is a failure, and the diet may or may not be working, and even if the diet succeeds the best I can hope for is to be slightly less fat… what’s the point?
I’m trying to finish a draft of a novel. But every word is hard and it takes so long and I have no idea if it’s any good. And if it gets finished, and I edit it, and it’s good – what then? Then all I’ve got is a pile of words I kind of like. Which is nice but it doesn’t do me much good. It’s a lot of effort for something that doesn’t pay the bills.
I don’t know how much longer I can keep going forward when every step is shorter than the one before it but hurts more.